NZORD Newsletter 2005 #9 - 15 September 2005

Hello everyone,

In this issue:
1 - NZORD turns 5.
2 - Possible funding for PGD and Newborn Hearing Screening.
3 - Another chance to submit on Pharmac’s Operational Policy and Procedures.
4 - Students shine in GenETHICS competition.
5 - What happened to the National Health Committee report on Genetic Services?
6 - Correction to figures on medicine spending.
7 - Reminder - Three important conferences.
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1 - NZORD turns 5.
Yes, it’s five years since the September 2000 inaugural conference that gave the mandate to set up NZORD, and set us on the path of making a difference for those disorders and conditions that usually suffer from being “below the radar screen”. It has been a challenging half-decade but there has been lots of progress made. Click here for a summary of key achievements.

2 - Possible funding for PGD and Newborn Hearing Screening.
Tantalising announcements about some items high on NZORD’s priority list came during the election campaign, with the Minister of Health signalling government funding for pre-implantation genetic diagnosis, and a universal newborn hearing screening programme. Both came amid a flurry of health announcements by political parties, but these two stand out as items of great significance to families affected by disorders that struggle to get priority status. Of course we mustn’t count our chickens just yet, as they are dependent on the election outcome. We hope the rationale for these two initiatives would be clear enough to be immediately supported by the parties that form the next government.

3 - Another chance to submit on Pharmac’s Operational Policy and Procedures.
In May this year Pharmac conducted a review of its Operational Policies and Procedures. Click here for our submission. Last month Pharmac issued a summary of responses and invited further comment. This is an excellent chance for interested parties to make specific recommendations on a range of points mentioned by other interest groups. Given the controversy surrounding much of Pharmac’s work, and the significant impact access to medicines has on the health and quality of life of so many we support, we encourage all groups to examine Pharmac’s new discussion paper and get submissions in by 30 September 2005. Instead of a full submission to Pharmac you can send key points to NZORD for inclusion in our submission, if you prefer.

4 - Students shine in GenETHICS competition.
The 2005 GenETHICS competition brought in a very high standard of entry from senior secondary school students, discussing the complexity of genetic testing and risk, and the ethics of disclosing, or not, the test of a school bus driver who might put others at risk because of a gene change associated with sudden cardiac death. NZORD introduced this competition to NZ schools last year, with solid support from the Royal Society and the Bioethics Council, and this year’s entries brought powerfully argued presentations to the competition final. Congratulations to Daphne Cohen of Hutt Valley High School for the winning entry. Click here for the essay that gained Daphne a place in the final judging, and read this page for the scenario students wrote about. There is little doubt the finalists will likely be the doctors, philosophers and researchers of tomorrow.

5 - What happened to the National Health Committee report on Genetic Services?
Two years ago this month the National Health Committee produced an important report on the design and delivery of Genetic Services in New Zealand. This followed over 18 months of consultation and discussion among professionals, officials and NZORD. Sadly there has been no concerted effort by the Ministry of Health to implement this report, yet the future of many health services depend on a sound Genetic Service to underpin diagnostics, ethics and service delivery. Genetic Services are especially relevant to diagnosis, care and prevention for rare disorders.
Enquiries by NZORD suggest the task of implementing this report has now been passed to the District Health Boards. We trust this step will not result in another two years of inaction on this report. NZORD will soon be seeking information from DHB New Zealand about their implementation plan, and will report progress in future newsletters. Click here for a copy of the Genetic Services report from the National Health Committee website.

6 - Correction to figures on medicine spending.
In our last newsletter I gave an incorrect figure for total pharmaceutical spending in New Zealand. I had presented the annual figure as being prior to rebates from the companies of over $100 million. In fact the total spend last year was $660 million prior to $103 in rebates, and for the current year the forecast is $700 million less rebates of $120 million, giving an estimated net expenditure of $582 million. My thanks to Wayne McNee, Chief Executive at Pharmac, for the correct information.

7 - Reminder - Three important conferences: Consumer Voices, Screening Challenges and Opportunities, and Medical Sciences Congress.
These three conferences offer support groups a chance to be involved in key discussions on matters relevant to their interests, and we encourage groups to take part in these to help influence policy and priorities, and build networks with key professionals. NZORD is actively involved with organising the Consumers Summit and the Medical Sciences Congress.

Screening Symposium 2005 - Screening to Improve Health: Challenges and Opportunities
3 - 4 October 2005, Te Papa, Wellington
For details contact: Email screening@conferences.co.nz Website http://www.moh.govt.nz/nationalscreeningunit/symposium [link no longer active]

National Health Consumers' Summit 2005: Strengthening Consumer Voices
31 October - 1 November 2005, Waipuna Hotel & Conference Centre, Auckland
For details contact: Leonie Brunt, NZ Guidelines Group Email info@nzgg.org.nz Website www.nzgg.org.nz

Medical Sciences Congress 2005
6 - 9 December 2005, Millennium Hotel Queenstown, Queenstown, New Zealand
For details contact: Email lynda.booth@auckland.ac.nz Website http://www.medscinz.co.nz

This month we have added to our Events Calendar a half-day seminar in the Hutt Valley on early intervention, education and social skills strategies for children with fragile X syndrome. Click here for the full list of events relevant to support groups.

Regards, john

John Forman
Executive Director